Friday, June 12, 2009

Our Diabetes Community (Expanded)

C was diagnosed on December 29, 2003. A diabetes community? We were it. We knew no one else who had type 1 diabetes. Our family and closest friends were as supportive as could be, but they, too, had no idea what this disease would mean for our family. It felt as if we were placed inside a maze. The only thing we could do was move forward.

Hospital. Education. Prayer. Sleepless nights. I remember being discharged from the hospital on a Friday. We had to be on our own until Monday morning when we were set to be at CHLA (Childrens Hospital Los Angeles), where the doctor assured us that we’d be taken care of. But we had to get to Monday. I was so scared. Injections? All on our own? I had dropped out of the nursing program in college because of this. The perfect irony.

I used the doctor’s cell phone number several times that weekend. But we did get to Monday. There we were at CHLA, learning soooo much. My head ached. We were given a gigantic notebook full of diabetes stuff – carbohydrate counting, scheduling, the different insulins, injection sites, etc.. And, that’s when we first met those wonderful people at CHLA…Dr. K and the dear, sweet nurses. How we clutched to them for our daughter's very life.

So, now, it was us, close family and friends, the CHLA nurses and Dr. K...our diabetes community. It was scary. It was lonely. Because, really, when we came home, and we weren't on the phone with the nurses, and Dan went back to work, and the boys were in was just us...C & me.

Family and friends surrounded our little family with meals and help with the boys. But when it came to the diabetes stuff…I was it. I remember thinking “I did not sign up for this.” But as you all know, the job was mine, applied for or not.

On the phone with nurses constantly...I can still hear their calming voices, helping me to gather my senses enough at 3 in the morning to measure and give an injection of 1/8 of a unit of insulin to my baby.

During one of those first weeks after diagnosis, I had to get my wits about me in order to pick up my oldest (then, in 1st grade). As I wheeled C’s stroller past the classrooms, someone came walking right up to me...gave me the biggest hug with tears in her eyes. “My name is K, and I know exactly what you're going through.” She handed me a bag, over-flowing with goodies for C...cute band-aids, Crystal Light mix, small bags of snacks (clearly marked with carb counts), stickers, small toys, a wonderful purple teddy bear...and her phone number. She said “diabetes is so difficult. Call me whenever you want.” Come to find out, her daughter was a second grader that year and had been diagnosed when she was just 3 years old. it was us, friends & family, CHLA staff, and now...K & her family. I can't tell you what a comforting thing it was to hear her say that diabetes is's so difficult. In a strange way, that eased the burden slightly. Because, finally, someone else felt it too. I wasn't alone. To this day, when someone tells me something like "Oh diabetes?...Well, at least it's manageable." Oooooh...I just want to scream! It’s hard, people! And, no, sometimes it’s not manageable at all.

Well, time has passed. It’s been over five years of learning, failing, trying… In those five years, we have met 3 other families in our immediate city with type 1. I have passed on the goodie bag to another family I heard about through a friend. We’ve met a newly diagnosed toddler and family at a neighborhood park to talk to and encourage in all this crazy stuff. We’ve been welcomed with open arms to a JDRF walk team and have joined them for the last 3 years. We’ve spent time at Family Camps through CHLA talking with dozens of other families with stories so similar to ours.

So…now it was us, friends & family, CHLA staff, K & her family, 3 other families, our walk team and…

Enter the DOC.

Like the #1 post stated, I’ve been a lurker for years now. It started with searches about diabetes, the pump, a 504 plan, etc. And then, I came across a blog about real life with type 1 diabetes. This was a young woman’s life, out there, nearly every day for me to peer into, and learn, and laugh. Her writing encouraged me so much. Here was this lady, living a full and eventful life…with diabetes. Her writing was so rich, so vibrant, so full of humor! What hope I found at her site, sixuntilme.

Kerri’s blog pointed me to others. I couldn’t believe the wealth of diabetes knowledge I found…not from medical people, per se, but patients themselves. These were real people living wonderful lives, despite diabetes.

So…now it was us, friends & family, CHLA staff, K & her family, 3 other families, our walk team and “just the tip” of the DOC.

And, then there's Twitter! Another extension of the DOC...supportive, inviting and encouraging. And I haven’t yet mentioned sites like tudiabetes and type1parents. There are some great things growing out there. I have been truly touched by this community. Support is just one mouse click away.

Thank you DOC! Keep doing what you’re doing! And, thank you, Gina, for the privelege of posting here!

You can find us on Twitter (@mypumpgear); on Facebook ; on our blog; or on our site

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